Remy was born with cleft lip and palate and a heart murmur. The heart murmur is not much of an issue anymore, just monitored even though it has not been detected at our doctor's visits and hospital stays. Remy's lip was repaired in China thanks to Operation Smile. We have been accepted to Shriner's Hospital in Chicago (like Ty) for the care of her repaired CL/CP. We have an appointment at the end of May for both kids, but this will be Remy's initial evaluation by a team in the US. At this time, her palate seems to be more severe then what Ty's was. From what we can tell, it goes all the way up to her nasal cavity which leaves her more prone to illness. Her gumb line is also unique and she can only drink out of a bottle with an "X" on the nipple. We have also introduced her to Tupperware's cups with lids for kids and they have been successful. Everything else has created nothing else but frustration and a few dollars wasted, at this time. We don't know what the future holds as far as how many surgeries she will need. Only time will tell and we will know more after her palate surgery. Remy does imitate sounds, but creates them from the back of her throat...not ideal for cleft affected kiddos. She is starting to use sign language after MUCH work. This has been an answer to prayer since we were all becoming frustrated with not knowing what she wanted. She would go, "UUUGGGHHHH", but not point or show any indication of what she wanted or what was wrong. This experience has been beneficial for me as a teacher of sign language for children. I now know what it it like to have a child that picked up sign easily and incorporated it everyday, to one who takes her time, but has success. Remy is a quick wit, but has proven to me how different children can be. I knew this when it came to the classroom situation, but it is a different story when it includes your own kids.
Wednesday, March 09, 2011
Remy Roo Continued
Little Miss Remy Roo is quite the ham. Her icky face is similar to her full grin, even though we have not found anything she won't eat. She adores meat, but avocados, brussel sprouts, broccoli and asparagus join her repertoire of foods. This little girl eats more then her brother, but knows when to stop.